Wednesday, October 12, 2011

Today is World Arthritis Day, and WarmSocks has asked me to help with raising public awareness of Rheumatoid Arthritis.

She wrote in because recently Dr. Phil said on national television and still has it on his web page that obesity is a risk factor for developing rheumatoid arthritis. This is incorrect. Weight is a risk factor for developing osteoarthritis, but not rheumatiod arthritis. These disorders ARE NOT the same.

Her organization is doing a "post your numbers" (or numbers in support of someone else) project Similar to the Facebook "colors" project for breast cancer awareness. They're asking people to post weight/age of onset/current age.

She writes that if you don't know someone with Rheumatoid Arthritis, to please think about "80 pound Lori, diagnosed with juvenile arthritis at age nine. Now fourteen years old, she's lived with arthritis for five years. There is no cure. Please post 80-9-14 as your Facebook status and help raise awareness."

Can we also raise awareness for spondylitis? Spondylitis is a type of inflammatory arthritis - sort of like RA - which primarily affects the spine and sacroiliac (SI) joints but can also affect peripheral joints such as hands, feet, knees, and hips. The inflammation causes pain and stiffness and can also cause excess bone growth (syndesmophytes) which can lead to fusion of the SI joints, spine, or other joints.

Although more people have spondylitis than RA, RA gets a lot more attention, more research funding, and is much better known. From http://www.spondylitis.org/about/overview.aspx - "The Centers for Disease Control and Prevention for the National Arthritis Data Workgroup estimates that ankylosing spondylitis and its related diseases affect as many as 2.4 million people in the United States. It should be noted that rheumatoid arthritis only affects 1.3 million adults, down from the previous estimate of 2.1 million."

The Arthritis Foundation limits its attention to osteoarthritis and RA and excludes spondylitis in its awareness and education campaigns, publications, etc.

I'm going to get flamed to the end of the Earth for this, but posting these types of things (or changing your picture or whatever) on FaceBook are very common but, sadly, really does nothing to help it. All it does is give people happy, fuzzy feelings that they've done something.

Say 50000 people post something on their FB page to "raise awareness" of RA. What has that done for RA? People know more about it, sure. But how does that really help?

Instead, I encourage people to post things that are pro-active about a cause. "I'm writing to raise awareness for $THING. This is a fact about $THING. These are the organizations that are searching for a cure. Here is where you donate money to help. Here is where you volunteer to make a difference. Help get rid of $THING in our lifetime."

Dr Grumpy you're a good person for wanting to help. Dr Phil is of course one of the biggest well-known idjits on the planet, right next to that big-boobied anti-vax boobie. And I know WarmSocks means well to think of this.

But making people aware of a problem doesn't help the problem. Instead of just encouraging feel-good campaigns, let us put the power of the Internet to use to help find a cure for RA (and a host of other things, and other good causes).

@Jen – IAAM includes AS as one of the seven types of autoimmune arthritis. I don’t think anyone’s really picky about whether the dx is AS or USpA.

@Moose – We’d love a cure. Nonetheless, this post does address part of the problem. The vast majority of people go deaf on the word “rheumatoid” and only hear arthritis. They only know about grandpa’s osteoarthritis. It is a problem when a teacher ridicules a teenager who is physically incapable of doing something because the teacher doesn’t know that kids can get arthritis. It is a problem when someone who must take one day off work every month to get IV meds to treat their disease is harassed at the office and told they’re too young to have arthritis. I would agree with you that “raising awareness” about breast cancer is futile; who hasn’t already heard of breast cancer? Autoimmune arthritis is different. People don’t know what rheumatoid arthritis is. Or psoriatic arthritis. Or Still’s disease. Or ankylosing spondylitis, sjogren’s syndrome, lupus, and mixed connective tissue disease. It is very helpful to patients, with those few people they reveal their disease to, to not be belittled and told, “You’re too young,” or “Oh, I have that in my little finger.” People won't donate money to find a cure for OA because it's considered part of getting old. We definitely need people to donate for a cure for autoimmune arthritis, but first they need to know that it's not OA and that their money will be well-spent.

I have to agree with Moose awareness is good but not good enough!! Being aware does not get anything solved and you have helped no one but yourself. You want to do something? If you can't donate $, bring someone food, pay a bill for them, give them a ride, or just say a prayer for them. That my folks is how everyone wins! Take it from me I am a 1 1/2 year survivor of breast cancer and without all of the above I wouldn't be here today!

@WarmSocks: As Moose said, instead asking people to post "80-9-14" on your Facebook status (a status bound to confuse anyone not already 'in' on this awareness exercise), why not do exactly what was suggested and post a FACT (or personal anecdote) about RA, followed by a link to an organization that promotes RA awareness? Surely a better way to raise awareness for a misunderstood cause is to use proper phrases, not just secretive gimmicks?

heh. this is topical to me right now as I'm going through diagnosis to see if I do have RA.

I was bemused the other day to find on National BBC News claiming that Obesity was causing a Sleep Apnea problem. There has been numerous reports that not getting enough sleep can cause people to eat more... causing Obesity. Somehow that never got mentioned by the "expert" whose advice was effectively "Lose weight you fatty, your sleep apnea will go away and you will stop being a burden on society".

@WarmSocks - other people said it for me, and well, but I'll repeat what they said this way:

- Imagine if Salvation Army bell ringers stood outside at Christmas with nothing but a sign saying, "1 in 10 households in the US is going hungry tonight." They don't take donations, they just want to raise awareness for the hungry.

- Imagine if your friend is going to run a race to raise awareness for brain cancer. Instead of taking donations they give you flyers to pass out telling you all about brain cancer.

- Imagine if Toys for Tots just put up signs saying, "This Christmas, 15 million kids won't have any presents."

Information is useful. But without something behind it, it's just words.

I know you're frustrated with that TV Idjit, and "Who hasn't heard of X" doesn't matter. You're always going to have ignorance, and people will always believe what they see On The TV out of it. There are people on this planet who believe you get breast cancer from wearing a bra or using deodorant. There are people who believe you get diabetes from eating candy. I regularly deal with diabetics who believe that if you get an air bubble in an insulin syringe it will go to their heart and kill them!

Fighting ignorance is a problem, and sharing (correct) information is important. But if someone is going to start a campaign to raise awareness about something why not tie it into a way to help that thing? Make these online campaigns do something instead of just making people who repost information blindly think they're doing something worthwhile. Why not encourage people to actually do something real and tangible, while you have their ear?

As someone who has RA I am grateful for both Dr. Grumpy and WarmSocks for posting this. It is very frustrating to live with constant pain, fatigue, and physical disabilities but it is more frustrating when people don't understand what it is. Replies are usually similar to the ones WarmSocks posted (I'm 36 years old "far too young") or suggestions to take Tylenol or glucosamine and you'll be fine. No one understands that just getting out of bed is a struggle we face every day. My hair is falling out in clumps due to medication and I schedule in 2 naps a day so I can function. Yet people think this disease is just a twinge of pain in one joint not massive pain in almost all joints. It would be wonderful if more people understand this disorder and not just assume it's arthritis.

The problem with these 'raise awareness' posts is if you're just posting a number, or a colour no one knows what you're actually posting about, and most people don't bother to ask. They just look it, think 'another stupid, pointless post' and move on. How about actually posting a link to an organization raising money for the cause, since scientists can't fund their research with status updates.

I have Complex Regional Pain Syndrome (CRPS), previously known as Reflex Sympathetic Dystrophy Syndrome (RSDS), hence my user name for med blogs. For now it is in remission, but there is no cure and it could spread to other areas at any time.

I also have Cervical Spondylosis, which is a real pain in the neck. It adversely affects the migraines that I get.

I posted, but with an explanation of how rheumatoid arthritis can affect one's life and LEAD TO obesity (I was diagnosed at age 6... when I got pregnant in my 20s, my arthritis went nuts and I was barely able to move around, gained a bunch of weight that never went away, and now at 36, I'm desperately trying to get rid of it DESPITE the arthritis).

WarmSocks, I had never heard of IAAM before. I'll check out their website. You said nobody really cares about the distinction between AS and USpA - I beg to differ. It matters when you have a day that your rheumatologist of 4 years finally begrudgingly admits that while you do not have ANKYLOSING spondylitis, you MAY have "some sort of nonspecific seronegative inflammatory spondyloarthropathy" - AKA spondylitis. That day was this week for me. The disease name now endorsed by ASAS is "spondylitis." If one has spondylitis without fusion one may feel like something of a red-headed stepchild of an invisible disease as long as the term "ankylosing spondylitis" continues to be used so freely.

Re: awareness - I raise it through personal conversations but mostly by monetary donations to organizations such as SAA and CCFA (the latter because my 10 year old daughter was diagnosed with Crohn's at 3.) In addition to funding important medical/scientific research, these organizations do a lot of great work with public service announcements, etc. to truly increase awareness among the public and maybe even more importantly, among primary care docs who should be sending more of us to specialists for evaluation, sooner.

The example I like to give my composition students about the difference between causation and correlation is by asking them what they immediately think of when asked what leads to migraines. One of the first answers is chocolate. Then I tell them that studies have recently examined the connection between chocolate and migraine, and when known migraineurs are made to eat chocolate, they don't have an increase in migraines. Scientists have discovered that there is a phase before the pain hits called a prodrome, and that involves sugar cravings. What kind of sugar do most Americans turn to (but not me because I can't stand the stuff!)? Chocolate! So instead of the chocolate causing their migraines, the migraine influenced them to eat chocolate! I know it's actually more complex than that when you get into all the medical issues, but it serves as a striking example of how important it is not to assume that because one thing came before the other, it caused the latter!

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